Congressional Advocacy: A Conversation With Dr. Robin Zon

Congressional Advocacy: A Conversation With Dr. Robin Zon

Editor’s note: Dr. Hudis hosts the ASCO in Action podcast series, which focuses on policy and practice issues affecting providers and patients. An excerpt of a recent episode is shared below; it has been edited for length and clarity. Listen to the full podcast online or through iTunes or Google Play.

I am excited to have as my guest Robin Zon, MD, FACP, FASCO, who has served as chair of ASCO's Government Relations Committee (GRC). She was recognized as ASCO's Advocate of the Year, and you're about to see why. Dr. Zon is a medical oncologist at Michiana Hematology Oncology in Indiana, and a real champion for high-quality oncology care.

CH: I want to turn my attention to the big question first—one which, in the current political climate, I am sure has some members shrugging their shoulders. Why does advocacy at the Congressional level actually matter? That is, why should oncologists and others in our already burdened, busy community care about what's happening in Congress? Why should they try to do anything about it? Does it really make a difference for providers, and ultimately for our patients?

RZ: To answer your last question first, I really do believe that our involvement absolutely makes a difference, not just for providers, but most importantly for our patients. And the reason why is that Congress really impacts our policies, and our ability to effectively care for patients on a daily basis. They play an important role, actually, in all aspects of cancer care. Whether you're conducting research, or whether you're buried by prior authorizations, or you're dealing with underwater drugs in some cases, or if you're just simply worried about your patient being able to afford their drugs, you need to be paying attention to what's happening in Washington.

That's why ASCO is so vocal on Capitol Hill and why it's so important that the entire oncology community take action on policies that are important to them and to their patients. The most effective thing that we can do to try to influence our members of Congress is to call or visit with them. They really take it seriously when providers, who are actually caring for their constituents in their community, come and talk to them, and help them understand what the needs are and what the challenges are in delivering good care to their constituents.

CH: One of the ways in which I was drawn into deeper involvement with ASCO, even when I was a volunteer, was my activity in the political domain in general and specifically on the GRC. I think we all go through a little bit of a life-cycle education where you develop some degree of cynicism, probably, about the political process. Yet, what I saw is something along the lines of what you say: the rewards may not be immediate, but the return on investment actually is there. And one of the important ways that anybody in Congress can be informed is by learning from the experts, and that is, in this domain, ASCO. So I wonder whether you could give some examples, something that might illustrate to the members how this really can work.

RZ: You make a great point that when we're dealing with advocacy and policy work, there are some situations where you might have wins in the short term. But really, the way we're going to be most effective is if we develop policy priorities and we advocate a consistent message over a period of time. To give you an example: As you know, the National Institutes of Health (NIH) relies a lot on federal support for clinical research. It's integral, as we all know, that clinical research be effective and successful to be able to advance oncology care. But it took us a lot of years to try to convince the government to fund the NIH above and beyond flat funding. What was happening is that the NIH was getting funding every year, but there was never an increase, so when you consider inflation what we were seeing is that there was a cut to the NIH. There was a lot of hard work by a lot of groups of people, by patient advocates, by advocates from the entire biomedical community, as a matter of fact, to drum up some strong bipartisan support for significant and sustained increases to NIH. Finally, we were successful. We as a community were successful in being able to get increases to the NIH. As of this recording, Congress is still working through the budget for 2018. But what we did see in 2017 was a sizable increase in funding. And actually, we're getting indications that if Congress can work through all these other unrelated issues, that the NIH will receive another significant increase in its budget.

Keep in mind that it took several years for this to actually happen. We identified the problem. We set a policy priority, then we advocated a consistent message in line with our sister societies to make this happen.

CH: Your story about the NIH funding reminds me that for many years we felt downtrodden. We would go year after year, we would ask the same of Congress, which was in those days about a $2 billion annual increase in the NIH budget, and we did not get it, and this went on and on. Then, 3 years ago or so, a switch seemed to be flipped, and as you point out, the $2 billion increase has started to come year over year. What was most exciting was a bipartisan claim of ownership for that support. Nothing makes me happier than to see the Democratic and Republican friends in Congress each claiming that they are responsible for increasing the NIH budget. Frankly, I don't care who gets the credit, I'm just delighted that it paid off. But it makes a point, something that's somewhat frustrating for people who don't do this all the time, that you have to stay at it. You have to accept that on a daily basis, you might not see that return, and yet, in the long run, it may occur. Patience is a virtue, right?

RZ: Absolutely, and you're exactly right about that point. It does require persistence, and you need to remain focused and not become unnerved, because eventually, as that success story shows, working together and collaboratively, we actually have been able to make a change.

CH: One thing that I think many members will ask about, and we've seen a little more of this of late, is the local aspect of political advocacy and policy activity. Do you think that our members should be paying the same kind of attention at the state level as we are discussing here at the federal level?

RZ: Absolutely. States, as you know, are becoming very critically important in terms of setting policies that can impact cancer care locally. ASCO has been very active at the state level through direct contact with the state legislators’ and governors’ offices, state insurance commissioners, and Medicaid offices. ASCO provides assistance to our members and the State Affiliates with toolkits and information on very important legislation that their state may be considering, as well as other guidance. From an ASCO perspective, we're paying particular attention to clinical pathways, opioid education requirements for providers, and tobacco policies.

CH: I know it's always hard to make predictions, but with the November midterm elections now coming into focus, do you see a way that the midterm elections could affect the Congressional agenda? What do you think we have to be on guard for?

RZ: Well, there will definitely be an effect from midterm elections with regards to federal activity. In any election year, members of Congress tend to spend more days at home in their own districts instead of taking votes or holding hearings in DC. With less time in Washington, fewer pieces of legislation tend to move forward, and the bills that do advance tend to be much less controversial. This is particularly true for the latter half of the year, when the midterm elections are really on everyone's mind.

That means that it's critically important for us to be vocal now about the issues that are important to the cancer community. But there's also opportunity in this, because the lawmakers will be back home, where they're often much more comfortable and feel less rushed. This is the opportunity for members to reach out and help build cancer policy relationships and champions on Capitol Hill to further our activity and our policy recommendations at the federal level.

CH: How can an individual ASCO member become an advocate? What do you recommend they do?

RZ: First of all, I would encourage all of our ASCO members to become involved in advocacy. It could be as simple as sending a message to your representative with either the federal or the state ACT Network. And it's quite easy to participate. You sign up. You get an email letting you know that there are letters ready for review. You review the letters, you click send, and it takes less than 3 minutes.

I would encourage our members to follow ASCO in Action to try to stay current. I also would encourage our members to set up meetings with both federal and state representatives as well as their governor's office. For those who are social media inclined, you can certainly follow many of your lawmakers through Twitter. Finally, I would especially encourage our members to check in with your State Affiliate as well as with the ASCO staff at grassroots@ASCO.org for further information regarding activities you may be interested in.

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